ALS is an incurable disease in which motor neurons that move the body age, and the whole body gradually becomes immobile. No effective treatment has yet been established, and the average life expectancy after the onset of the disease is said to be 3 to 5 years. However, consciousness, the five senses, and intelligence remain healthy.

One of their greatest wishes is to regain the physicality they had before the onset of ALS.

This project aims to fulfill thier wishes by utilizing technologies to create a new tool to help people with ALS to communicate with others by physical expressions and achive the future where they will not have to give up their physicality anymore to increase their wellbeing.

ALS is a disease first described in 1869 by French neurologist Jean-Martin Charcot (1825-1893). Charcot gave the name ALS to a disease in which pathological changes were found only in the spinal cord area related to movement among patients who had difficulty exercising and lost muscle mass. Currently, about 350,000 people are battling this disease worldwide. No effective treatment has yet been established.

The human body generates minute electric currents when muscles are moved. This is called an electromyography(EMG) signal, and although MASA cannot raise his arms because he is a patient with ALS, we found that this EMG signal occurs inside his body as well. We then developed a UI and system that connects the EMG signals in the neck, arms, and legs to the digital avatar. This allowed MASA to regain its physicality in the digital world.

"If you could regain your physicality again, what would you want to do?" we asked MASA. The answer was, "Waving to the audience while DJing was what made my life worth living. I want to do that again."

A performance with the EMG avatar was presented on 8th September 2023, at Deep Space 8K in Ars Electronica Center. Approx. 150 people were witnessed this world first performance. MASA then waved, walked, clapped, and responded to the audience from Tokyo by transmitting his EMG signals.

Deep Space 8K allowed the entire wall to be used as a screen, so the audience was plunged into a digital world where the real and virtual were mixed, and they experienced the immersive experience of MASA's avatar performing.

The audience and MASA waved their hands and swayed together and experienced a sense of unification in the venue. The audience even felt as if MASA was in the same space as he once was.

The news of the performance spread through about 100 media in several countries. The exposure gained was worth more than 1 million EUR in terms of advertising spend. It delivered a strong message that we don't have to give up physical expression even with ALS.

Based on this success, we plan to develop this UI into a communication UI that anyone can use in the metaverse space. We are also planning to challenge to reproduce the avatar's movements more like MASA himself, based on his own past videos.